Hi does anyone know what bowel biopsies need to look for when testing for scleroderma in the bowel? My rheumatologist asked for biopsies to be taken to confirm (or not confirm) scleroderma of the bowel. My Gastro did not do this despite being asked. He did however take biopsies which he used to test for crohns which I was already told I do not have. My GP suggested I request the biopsies be tested as apparently they are stored for a bit. I asked and got told that they were negative for amyloid so no scleroderma. Am I right in thinking there’s other things that can show in biopsies that can indicate scleroderma? I have had a very very hard time getting anyone to help and have been waiting over 20 years for someone to figure this out. All I know so far is definite autoimmune and raynauds and a load of other things but the bowel side is a mystery. Thank you for any replies.
Scleroderma in the bowel?: Hi does... - Scleroderma & Ray...
Scleroderma in the bowel?
I don't think that you need biopsies to diagnose that scleroderma is affecting the bowel. If you have scleroderma and you have bowel problems, then that's all I think that you would need as you would have symptoms such as diarrhoea or constipation. This is all my consultant needs to know anyway. If scleroderma was really affecting the bowel, you would be able to see areas of thickening upon colonoscopy.
They’ve told me I have been tested for normal scleroderma in blood tests and they came back normal except the ANA which is always positive but they said that the ANA pattern was very unusual and suggests that whatever I have is either a completely new autoimmune disease or a rare type of an established disease. I have all the symptoms for autoimmune issues with the bowel but they said that they needed to have biopsies to confirm because they aren’t sure what they are dealing with. I went for the procedure and the Gastro took biopsies but decided only to test them for Crohn’s disease and nothing else. To say I was furious is an understatement. The Gastro ignores the autoimmune side and I feel at my wits end with it. He keeps re-doing the same tests because he keeps believing that I have iBD when I do not. I have asked if I can be seen by a specialist Gastro who understands autoimmune and have been told no. They have said that I need to go through all the tests that my gastro wants to put me through before they will do that referral. This has been ongoing for years and years. My GP told me that he really should have checked the biopsies for autoimmune as asked in the consultant letter therefore I went back and kicked up a fuss and he said he got his pathologist to look for amyloid only and that means there is no autoimmune issue. I want to know if there’s anything else he should have looked for. I’m just being sent in circles and every time I think I’m near the end of the batch of tests so I can ask to have the referral that I was promised he ends up ordering a load more that I’ve already had. Meanwhile my symptoms are getting worse and worse to the point where I can barely leave the house any more. Sorry for the moan!
flowflow, they really give you the runaround, I can see you are at your wits end.
However, if your symptoms have been there for 20 years, you haven't mentioned what are your symptoms actually?
I wish you the best,
pigeon
Tbh it’s just because there’s that many I just get too knackered to write it out but yes I didn’t— so I have severe abdominal pain daily, diarrhoea , slow transit, faecal incontinence, anal fissures, suspected gastroparesis so I’m full up all the time, eat, feel sick, battle nausea for rest of the day and battle bringing the food up the rest of the day! Have started choking on food, food comes back up after eating, struggling to swallow (even bringing liquid back up some days), struggling to lie down after eating and now have to wait at least 6-7 hours before I can lay down or food comes back up. Pain in stomach area higher up now too after eating. Loads food intolerances. That’s just the bowel side- whatever I have is effecting everything so there’s loads of other things ongoing too but bowel side bothers me most as I am so fatigued as can barely eat. Lost a lot of weight just arghh lol
oh flowflow, that's awful; doctors sometimes seem to dismiss symptoms to which there are no "text book" explanations, which they cannot explain, and as a result the patient is left alone to suffer, with no answers.
This is indeed a sad state of affairs.
I think that as you said, a Gastro specializing in immune diseases is your best bet.
Just ask them EXACTLY what more tests they want you to go thru before they refer you to a specialist?!
Has your oesophagus been checked?
Nope not yet. 
it’s all about u ‘must have crohns’. I think I just have to push to see the right specialist. Thank you 
I'm not sure why they're concentrating on your bowels. If you have scleroderma you would almost certainly have symptoms such as raynauds, and you should be seen by a rheumatologist who should be coordinating your care?
Yep I have raynauds and all the other usual bits. I think they are focusing on bowel because of weight loss and bloods showing malnutrition
Ask to have a motility test this may be your issue and they have meds to determine the food digesting. I'm on omiprosol for my stomach pain still waiting to see what doc wants to do to speed up my digestion I'm at 73 percent and it causes stomach pain, nauseous like the food just rots its horrible!
Get on the Mediterranean “diet”. Forget doctors unless your about to die. Eat eat eat!
Latest study was 1 yr- 600 people in 4 countries.
2 inflammatory markers came down and results are VERY positive. Just find a love for food again. Thats what Im doing. Forget all the uncertainty..doctor after doctor. Appointments coming up with basically nothing. Live your life!!! 😃. Thats where Im at...... Kaiser doctors will no longer hear from me. Waste of time and $$$$$!
My bowelplays up but comes and go,I have had scleroderma for 35 years I have lots of symtoms but they have being getting a bit worse as i have gotten older !!
I have scleroderma aswell mine in my arms hands neck shouders it so pain full all the time hope u be ok keep me postec x
I too have bowel, bladder and sickness problems a lot of the time with this Scleroderma all happening at the same time. It is another sign you have this illness. Comes most of the time from walking. I start with very painful stabbing pains in the bottom of my stomach and my mouth waters strangely enough. Then it is find or go to the toilet asap. They really do not know how to treat me with this problem because they are treating everything else. It does sound like a colonoscopy to me. i hope that they can find a help for your problem.
I have double incontinence. A colonoscopy detected an unusual number and length of diverticula although I’ve not had the lifetime of constipation that usually causes it.
My pelvic floor is lopsided.
The problems started with severe GERD and rapid loss of weight. I remain very underweight, with a small appetite and small range of food I can tolerate. Over 5 years it’s gone from mouth to bum, and can be painful.
The specialists are working in silos so I’m left with no idea if there’s a connection. TBH whether there is or not, I just want more treatment!
I think a colonoscopy is really needed for you, though I’m no medic at all.
I think you hySIBO (small intestine bacterial overgrowth, slow transit and reflux.
You need to see a specialist gastroenterologist linked tea specialist centre.
I don’t think you need biopsies. This is symptomatic of scleroderma.
You need treatment.
I think you should be on rotating antibiotics, I have three,and rotate every 2 weeks. I also take movicol to empty the bowel.
Erythromycin and metocloprsmide to improve transit.
Are you at a specialist centre like The Royal Fred?
Good luck x
You need to have motility testing a gastric emptying study or the smart capsule checks the stomach, small intestine and large bowel transit times. Liquid diet works best avoid hard to digest foods such as fibre and fats.
Scleroderma 
Recently diagnosed with systemic scleroderma 
Pre Scleroderma Confusion
